My name is Jessica, and I'm not going to shut up anymore.

Tuesday, December 15, 2015

(Not a) Mystery Diagnosis

I just had surgery, again, for the second time this year. And it sucked. How's your life going?
Me as Ursula the sea witch this past Halloween. Fitting, I think.

Even though I haven't written a blog post in a while, I have been keeping active with my online community of endo sisters. One of the main concerns I see quite often is that of a return to a life with chronic or acute pain. So often we depend on those surgeries to wipe away any anguish, fatigue, nausea and pain. Usually it works for a while, but it's not a surefire way to stay out of the frying pan.

You see, as a patient, we have responsibilities. For me, I'm supposed to not only take my medicine, but I'm supposed to make sure I'm taking it on time and not skipping doses--especially for hormones. I am also supposed to eat healthily, avoid alcohol/fatty foods/fried stuff/gluten-heavy delicacies of awesomness. And for the most part, I really do well with this habit. Finally, I know I'm supposed to stay active, get sleep at night, and make sure I'm conscientious of my stress levels because I often get sicker when I'm more stressed. It's all connected, you see.

What happens if I don't follow these rules--these rules that were set by both ME and MY DOCTOR, by the way. This is not a one way street--it is a two lane highway going in both directions. Let me tell you what happens when I forget to put in my new NuvaRing: I get cysts. LOTS. Oodles of gross, painful, and sometimes hemmorhagic cysts (which means they're bloody on the inside and dying). Eww. And lemme tell ya--these fuckers hurt. It is not comfortable by any means, and as I type this, I have a small hemmorhagic cyst that's killing me softly with its song. And it sucks balls. Well, I guess it sucks ovaries.

So I'm writing this blog to remind us all to follow our own directions. If you don't, you may end up with a bad flare-up or worse, an awfully painful cyst that is literally tearing your ovary as it tries to attach itself to your abdominal wall. Also, for the record, ovaries have a comparable amount of nerve endings as do the male testicles. Could you imagine having your balls trapped in a vice for 3 weeks and then in the 3rd week, it starts to rip your balls? If you can imagine this, then you know what it's like to be me this past November. It was awful.

Luckily, however, figuring out what is wrong with me has become a project in itself that I am kicking ass on. I can totally tell when something isn't quite "right" with my body, and I'm able to feel confident enough to follow my instincts and get an ultrasound--even if that means I have to charge into the ER with awful pain. If you're an endo warrior, then you already know how dreadful it is to go to the ER with this disease; everybody thinks you're lying, that you're a drug addict, that you're faking it all for that shot of Dee-lo-lo (as a nurse at my last ER visit referred to it). Truth is, when you're in that much pain, the only thing that does give you relief is not only some medicine, but results. And don't you love when you know that you have a cyst and that you're not just crazy? I know I do.

I guess that's just the point: always follow your instincts and don't give up until someone listens--and I mean truly listens--to your story. Your life doesn't have to be an episode of Mystery Diagnosis if it doesn't have to be! For example, I had that cyst which started to give me issues way back in October. Then I had it removed because we thought it may have been causing ovarian torsion (and you don't want to fuck with that if you want kids someday). Then 2-3 weeks after post-op, I was sick again--really sick and in pain. Awful pain. And so nauseated, I couldn't even eat at Thanksgiving--my favorite meal of the year! You know it's bad if I don't pile my plate with stuffing. It turns out, I had a new crop of cysts--small ones on my ovaries (both) but all follicular cysts. I knew it, too! Another 2 weeks later, and still having pain and nausea, I had another ultrasound which revealed yet another hemmorhagic cyst that's on my right ovary as I write this. I knew that was going on, too!

While I don't have to have surgery to remove this ovarian cyst, I do have to start thinking about other methods of hormone therapy before my husband and I start trying to conceive. I'm not quite there yet, but I have to start thinking about it for the sake of my health and sanity; in other words, this right ovary is a trouble maker and will probably have to be removed in the future. This is the start of yet another chapter in my journey with endo that I did not really anticipate, but I feel okay moving forward. "Okay" means that I have the support I need at home and from my physician's office. 

I may not exactly know what will transpire with my body over the next, few months, but I'm okay with figuring things out as I go. In the meantime, I'll continue to listen to my body, make sure I take my meds on time, and keep in touch with my doctor. And if something feels out of place again, I know exactly how to handle myself. What a blessing that is when you really think about it.